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Author Topic: Knee in severe pain, no explanation  (Read 21048 times)

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Offline Snowy

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Re: Knee in severe pain, no explanation
« Reply #45 on: January 08, 2011, 12:05:26 AM »
So glad to hear this - sounds like you're finally making some forward progress, even if you don't have any definite answers yet. It's amazing how much difference it makes getting the right medical professional on your case. Your new doc sounds like a godsend.

I wish you the best of luck with the next steps!
Mar 11: R Biceps femoris tear (skiing)
Jul 10: ACLr (hamstring autograft)
Mar 10: L ACL rupture (skiing)
Feb 06: L partial ACL tear (kickboxing)
Dec 03: R bone edema (motorbike)
Jan 01: R patellar chip (motorbike)
May 93: R ACL sprain (hockey)
Ongoing: bilateral PFS and OA

Offline knee always hurts

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Re: Knee in severe pain, no explanation
« Reply #46 on: January 18, 2011, 07:59:40 PM »
My appointment with the new specialist in Boston is on Friday. As best as I can glean from what I've read, this doctor was one of the pioneers in the field of arthroscopy. Before he developed his techniques, arthroscopy was used primarily as a diagnostic tool rather than for correction of knee pathologies. It seems, if anyone will be able to help me, it is likely to be this new doctor. My hope is that he'll either be able to correct the problem, or refer me to someone who can if arthroscopy is inappropriate for my condition. It seems as if I've gone from pretty rotten doctors to the best of the best. Wishing myself luck for Friday...

Offline anthonychia

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Re: Knee in severe pain, no explanation
« Reply #47 on: January 19, 2011, 04:29:20 PM »
Hi, I just read through all your posts and I was wondering what type of doctor was he? the one that really listened to what you said? a GP from a hospital or a surgeon? My knee symptoms are quite similar to yours (discomfort below the kneecap for at least a year and a half), but I think I haven't reach that critical stage yet. I quit doing sports for more than a year and my muscles are degenerating. It will be great if I can find out what my problem is before it gets worse and get it fix asap.

I was first diagnosed (wrongly) with patellar tendonosis then fat pad impingement and now my MRI shows grade 2 MCL sprain. I have seen more than 5 physio, 1 orthopaedic, acupunture and tried all different kind of exercises. They helped at first but then the situation gets worse and now i am trying my best not to cause my knee to deteriorate. Few months ago, I started having loud cracking sound when I bend and straight my knee. ten times louder than when I crack my finger. Basically, I have no clue what is happening to my knee because all doctors have different diagnosis and this is really frustrating.

I really hope everything will turn out fine for you. And maybe you can provide me with some help with what kind of doctor/specialist I should seek help from and what should I mention to them so that they can treat me seriously. Should I get a CT scan?

Thank you.
« Last Edit: January 19, 2011, 04:32:59 PM by anthonychia »

Offline knee always hurts

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Re: Knee in severe pain, no explanation
« Reply #48 on: January 19, 2011, 05:49:19 PM »
Hey anthonychia,

I'm honestly not sure about the background of my doctor, but the founder of the clinic was involved in directing a pretty major medical center years ago. I think his intention was to found a family practice that was based on a philosophy of providing the best possible treatment for the patient rather than simply rushing the patient through the visit to maximize profits. It's really hit or miss with finding a good doctor, but I think a bare minimum standard must be that the doctor is willing the hear the patient out. If they are not interested in that, your first visit should be the last one.

With these sorts of intractable knee problems, that may not hew to conventional diagnostic criteria, what you really need is someone who is willing to take a deeper look at the problem. Think House, M.D. (Though one would hope with a friendlier disposition).

If you're able to, I think the ideal doctor to seek out would be one with research credentials, and if possible specializes in the patello-femoral joint. The interesting thing about research doctors is that, often, contrary to your expectations, they might actually give you more time than a non-research doctor. And that is because they are actually trying to contribute to the furthering of their field. They're actually quite interested in a strange and unsolvable cases, whereas a non-research doctor might just find you to be a waste of their time. They don't know what your problem is, and spending more time on it will actually cost them money. I hate to sound cynical, but such appears to be reality, at least as far as my experience and knowledge of the medical system goes.

My new doctor is actually a Harvard Professor who is extensively published in medical journals, so my expectation is that if he cannot find an easy solution to my problem, he will likely still be interested in resolving my case. The most frightening prospect is that there may simply be no known treatment for a what I have. It's possible that no doctor, not even the best, will be able to treat me. But you owe it to yourself to seek out what will be your best prospect.

I don't know where you live, but you should look for the largest major city near you, find the research hospitals, and see if there are any knee specialists there. It might be quite a burden, but it could also be your best hope. Good luck to you and keep me updated on what you find!

Offline knee always hurts

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Re: Knee in severe pain, no explanation
« Reply #49 on: January 24, 2011, 11:35:14 PM »
As it turns out, the appointment was delayed to today as a result of the heavy snowfall on Friday.

When I first went into the doctor's office, he asked me where the pain was located. I explained the history over the last 16 months, and he took a close look at my alignment. He actually said that my alignment is fine. He then manipulated my patella and said that it appears that I have patellar instability. He then got straight to business without mincing any words (This is the painful part). He said that there is no surgical procedure that would benefit me (This is similar to what rbcyclist was told, but apparently my own condition is far worse than his was). I asked if I should get an MRI or other scan. He said that MRIs are overrated and would be unlikely to show anything useful. He also said that there would be no reason to get any other scan.

He then told me that I should go back to my primary care doctor and get an appointment to see a rheumatologist and pain management specialist. He said that the problem is now a problem of chronic pain and is not something that can be treated by an orthopedic specialist. Does this remind anyone of highroller? I don't expect any different results, either.

He did prescribe me a specialized brace, but is this really going to make any difference? I'll find out in the next few days. For now, though, I need to figure out if this makes any sense. Has anyone actually been in a similar situation to mine and gotten relief from a rheumatologist? I should also note that my doctor is a general knee specialist, and does not specifically specialize in the patello-femoral joint. But is it possible that a research doctor, a Harvard professor, could be so woefully misinformed on the current range of treatments that another doctor might be aware of?

Is there any sense in attempting to seek further treatment, or is it just time to give up now and accept a life of disability and chronic pain? I suppose my hope that this doctor would offer anything new was more wishful thinking than anything, given how the medical literature is almost devoid of any coherent treatment options for this sort of condition. It's was a hope that maybe there was a secret stash of special Harvard research that this doctor had access to, but apparently not.

I was saying to myself the other day, half-jokingly, that the doctor was going to say that there is no treatment, but that he'd hack my knee off if I wanted. He did actually mention patellectomy as a last resort. So there is a surgical option after all!

I know that at least a couple of people were watching this thread, hoping that I might find out something that could apply to their own case. Well, there you go. I think my father said it best: When I told him what the doctor said, he replied, "If there was a treatment for everything, we'd all live forever." Now, if you don't mind your patella being hacked off, you might get somewhere.

So, does anyone have any thoughts corroborating or contradicting what I've heard today?  :-\

Offline amoler

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Re: Knee in severe pain, no explanation
« Reply #50 on: January 25, 2011, 01:19:19 PM »
The Harvard guy sounds a little stuck on his importance. Research experience doesn't guarantee good results or cooperation. (Lord knows I ran into some monumental egos in the couple of years I did research for a med school) Sounds like it he basically told you to suck it up and learn to live with the pain. I think I'd keep hunting. It took me 5 tries to find a doc to solve my migraine issues. -I know, diff. problem, but the premise is the same - to find someone who willing to try various things until you find a solution or at least some control.
'77- Rt knee menicus tear
'90 -2nd menscus tear
'91 -failed arthroscopy/partial menisectomy
patella dislocation 10/ 2010
Dx = grade 4 chondromalacia + synovitis + Meniscus tear + lax strained medial ligaments
Fall down the stairs 7/20/11 - mcl sprain + 2 meniscus tears

Offline knee always hurts

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Re: Knee in severe pain, no explanation
« Reply #51 on: January 25, 2011, 07:47:33 PM »
Maybe you're right amoler. I'm having nightmare visions of my kneecaps getting hacked off. Thanks doc.

I certainly don't want to go into surgery if it's only a false hope though. From everything I've ever read, both here on the forums and through my own research, surgery is only really efficacious in very specific circumstances. Otherwise, it is some combination of PT and slow rehabilitation that is going to be helpful. Beyond that, it's tough luck.

I certainly don't think that Pain Management is going to be a route I want to take, being permanently on some sort of harsh pain medication. In any case, I don't think there is any pain relief strong enough to allow me to walk, unless I somehow manage to improve the condition of my knee. On the other hand, when I'm not walking, I don't really need pain medication at all. I take an occasional acetaminophen. I'm always sore, but I can manage it.

From everything I've experienced, I certainly believe that the origin of my pain is mechanical. Thus, I don't suspect that a rheumatologist is going to help me, but I just might pursue it anyway, if only to rule it out.

The only thing that might be worth my time is to seek out a PF specialist. Chances are, they'll just want me to do more PT. Which might be the best thing, but my knee might not be able to withstand even light PT.

Offline smillie

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Re: Knee in severe pain, no explanation
« Reply #52 on: January 25, 2011, 10:24:35 PM »
Did he even do x-rays? What did they show?
patella pain began early teens
'94 TTT/LR/VMO adv.
'94 MUA
'10 tried PT again
1/11 scope/hardware removal
4/11 (Finally!) dx medial instability due to LR
5/9/11 LPFL reconstruction scheduled

Offline knee always hurts

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Re: Knee in severe pain, no explanation
« Reply #53 on: January 26, 2011, 01:28:02 AM »
No, he didn't. He asked if x-rays were taken by the other doctors I'd seen, and I replied that they were. He asked if they came back clean, and I said that the doctors never mentioned any problem with them. He didn't say anything else about it.

Do you think that it's possible to ascertain if there are alignment problems without an x-ray? He seemed pretty confident.

He made it pretty clear that there wasn't any reason for me to ever come in again. Honestly, given the glowing reviews that he got from other people I know, and his credentials, I was a little surprised with the way he treated me. But, if there really isn't anything he can do, then how else could he react?

Offline smillie

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Re: Knee in severe pain, no explanation
« Reply #54 on: January 26, 2011, 03:02:49 AM »
Just because he's great at what he does, it doesn't mean he is great at what you need. I have always had x-rays to diagnose my tracking problems. I don't know if it's possible to reliably diagnose it without them or not. But I've said it before...just as you would seek a second opinion if he told you that you needed a big surgery, it's probably a good idea to get a second opinion on a "do nothing" verdict. See if you can find a patella guy this time.
patella pain began early teens
'94 TTT/LR/VMO adv.
'94 MUA
'10 tried PT again
1/11 scope/hardware removal
4/11 (Finally!) dx medial instability due to LR
5/9/11 LPFL reconstruction scheduled

Offline knee always hurts

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Re: Knee in severe pain, no explanation
« Reply #55 on: January 26, 2011, 06:02:26 AM »
Darn, this guy is looking pretty good:

http://www.kneeguru.co.uk/KNEEnotes/node/764

Too bad he is in NYC rather than Boston.

Offline kscope09

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Re: Knee in severe pain, no explanation
« Reply #56 on: January 26, 2011, 01:47:41 PM »
it's too bad that he wouldn't do anything.  I don't know what a rheumatologist or pain management specialist is going to do about patella instability.  I'd would have expected him to be gun-ho for surgery and wanting to do a lateral release.  Be carefl with lateral releases, that is what they do when they can't think of anything else and they seem to be more touble than they're worth.

I'm surprised he said you ahd patella instabilitysince I've never read anything of yours that say's you've had silocations or subluxations and it your alignment is OK then what on earth can be causing patella instability.  It doesn't make sense and I would definatly get a second opinion.  Remember also, you are paying for your treatment, so demand proper diagnostics.
Feb 08 Inurred right knee
18 months of physio, knee tracking but knee still painful
Aug 09 Scope - Small tear in acl, fragment found in postereo-lateral compartment, suprapatella and lateral plica and small defect in mfc.
May 10 Right knee feeling better but left knee causing trouble as a result o

Offline Lottiefox

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Re: Knee in severe pain, no explanation
« Reply #57 on: January 26, 2011, 06:01:57 PM »
Oh dear.

This guy has one saving grace - he didn't suggest you had a "diagnostic scope, clean up and lateral release". Thank the Lord!!  :D

I find it hard to comprehend he can categorically discount alignment/tracking issues without scans. The final OS I saw told me my knee looked "straight" in terms of the joint, but that wouldn't tell him how the kneecap behaved in varying degrees of flexion with and without quads tensing. For this I had a CT scan. lo and behold there were irregularities. Nothing I have chosen to remedy surgically but it was good to get some diagnoses. I also have Grde3-4 cartilage damage, evidenced by T2 MRI scans last February. I'm doing everything to avoid surgery as I don't believe at age 41 it would do much - my knees don't track properly, so be it. When they wear out I will go under the knife..

A patellectomy is rarely done now. My Aunt had one done in 1985. She had no kneecap cartilage and crystals forming that were shearing off. PFJRs didn't exist then. She spent 3 months in a cast and has never had proper leg function since - OK, she walks but only for about 20 minutes and thats her done. She then needed a TKR 10 years ago for the remaining compartments. I don't think removing your kneecaps will be mooted!

You are younger than me with greater limitations. I am controlled by PT, meds, ice, avoiding daft things like spinning classes and snow clearing.....its OK. Not perfect but OK.

I would be epxloring a PF specialist. A rheumy may help, a pain management doc will give you meds and psosibly other strategies. If they are enlightended and can look at things like dry needling for example it can be worth trying....

Don't give up,

Lottie
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline kscope09

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Re: Knee in severe pain, no explanation
« Reply #58 on: January 26, 2011, 07:41:25 PM »
If anyoen suggested a lateral release for me I'd run a mile (not actually of course), they are nothign but trouble and seem to ruin more peopel than they help.

Oain management is a good idea but you'd only be treating the symptoms and woudn't be addressing the real problem.

A atella femoral doc is what you need.
Feb 08 Inurred right knee
18 months of physio, knee tracking but knee still painful
Aug 09 Scope - Small tear in acl, fragment found in postereo-lateral compartment, suprapatella and lateral plica and small defect in mfc.
May 10 Right knee feeling better but left knee causing trouble as a result o

Offline knee always hurts

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Re: Knee in severe pain, no explanation
« Reply #59 on: January 26, 2011, 08:15:54 PM »
Well, looking more closely at this doctor it is clear that he mostly, if not exclusively does non-PF stuff. I should have listened to the advice given many times on this forum and gone straight to a PF specialist.

Can you imagine it! A patellectomy. That is the only treatment option I was given. Does that make any sense? He is in his early 70s I think, but you would think he would keep up with the latest literature on such things. I can understand that he doesn't want to deal with PF issues if he mostly focuses on meniscus tears and ACL reconstruction, but why in the world wouldn't he have a PF specialist that he can refer people to? He told me not to bother going to any other knee specialist, or getting any scans.

If I did actually see a PF specialist, would it make any sense to have a "diagnostic scope" (sans lateral release of course!)? Or is that always to be avoided? Assuming that the only problem is patellar instability, is there anything that can be done or is it the end of the road? As I've mentioned many times, I never had any knee problems in my life before this all started in '09 after my foot injury. It just started out of the blue. That leads me to believe that there was a problem with a serious muscular imbalance (somehow caused in the few days that I was functionally limited by the sprain) rather than any congenital misalignment. But now that the damage is already caused, there seems to be no going back. That's why I was hoping that some sort of surgery could be a "fix". But it appears that with a lot of these PF problems there really isn't anything to fix.

I'm not even sure if I have chondral damage. Several doctors, including the professor this week, insisted that I do, but how is that possible? I know for sure that I didn't have it prior to last summer. Doesn't it take years to progress? How could I go from having a perfectly healthy knee to having one so ravaged by chondromalacia that I'm in the state that I'm in now, in only something like 3 or 4 months? And I was walking minimally during that time, and there was no hard fall or anything onto my kneecap. I know back in May last year, that I was able to do single leg squats pretty low with no pain or soreness whatsoever in the area that is now bothering me. If it is cartilage damage, it seems that it must have been caused by something unusual, and my only thought is that it might have been tissues in my knee that were severely inflamed for a couple of months over the summer. That tissue perhaps damaged the cartilage. I've never read this anywhere as a cause for these sorts of problems, but nothing else makes sense to me. Either that, or it isn't chondromalacia at all, but something else which was irritated by that same tissue.

If it is some kind of strange circumstance where something is badly irritated in my knee, couldn't that tissue be removed? And if it is a pretty bad chondral lesion under my knee cap, wouldn't I be a pretty good candidate to have some sort of cartilage replacement surgery? All I want is for a specialist somewhere to actually sit down for 20 minutes and listen to me explain what has happened over the last year and a half. So far, only my new GP has done that, but he isn't a knee specialist. If I can't get at least that, I don't suspect that I'm going to get anywhere. I at least don't want to be told that I'm a hopeless case before having other options explored.















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